The Patient Registry is a database that collects standardized information about a group of patients who share a condition. This will allow us to collect important data about how SPATA5 and SPATA5L1 affects our children.

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Collecting this information via the Registry means the data will be in a central place, allowing researchers to access it to compare symptoms, imaging, treatments, and more. 

Taking 10-20 minutes to enroll in the international SPATA Foundation Registry is one of the most important contributions you can make to advancing cures for these disorders. Have your loved one’s genetic report handy and plan on needing 20-30 minutes of focus time to fill out this form.

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You will be able to log in and make changes and updates at any time.

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The patient registry includes a consent form for you to read and sign, and then collects basic information including your loved one’s diagnosis, demographics, symptoms, healthcare utilization, diet modifications, test results, etc. This will take 20-30 minutes. Please have your loved one’s genetic report available.

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Please feel free to reach out to Mariah for further assistance if needed at info@spatafoundation.org